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Atrial Fibrillation Support

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Confusing Information

Divegirl profile image
9 Replies

I would welcome any insights others may have on my situation as the cardiac ward, anticoagulant clinic, GPs, hospital surgeons and surgeon who I am under review with, give greatly differing information with each communication.

I was diagnosed with moderate mitral valve regurgitation in July, in September I saw a cardiologist who stated I would have no symptoms other than the heart murmur and palpitations I have been experiencing the last two years but surgery would be inevitable in later years. I am 40, fit and healthy, exercise regularly and no other health concerns .

On October the 8th my heart went into overdrive -a long lasting and thudding palpitation.I exprienced pain and discomfort in my left arm and a feeling like I had a blockage in my throat, heavy sweats and nausea. After 2 hours of this I called the non emergency NHS line to be told to take myself to A &E. I made to do so and passed out so called 999 when I was able to stand up again.

A paramedic was called and confirmed a heart rate of 220 which was spiking at much higher rates so an ambulance was called and the whole blue lights etc emergency admission ensued.My blood pressure was 80 over 50 and blood sugar at 0.4 hence the passing out. I was diagnosed with paroxysmal AF and arrhythmia.

I spent three days on the cardiac ward having the chemical cardio version rather than the electro method. Since being discharged I have been on warfarin and beta blockers and had one small AF episode.

I have had one ECG since being discharged which was normal but have had episodes of prolonged palpitations which I cannot judge whether AF or not.

A week ago a letter from the surgeon I saw in September but have not seen since my emergency admission told me to stop the warfarin and beta blockers which I have. I am due to see this surgeon again on January 12th.

My confusion arises due to various medics telling me I was only on warfarin to prep me for cardio version which post discharge I was never scheduled to have, so have I been on warfarin for nearly three months for nothing?

Every hospital surgeon I saw and GP has said the AF will occur again, yet the cardiologist I am under says it was a one off and will never happen again ( am assuming he does not know about the second AF which happened in the warfarin clinic).

I was told in hospital that the Mitral Valve issue complicates the AF and makes it more likely to occur (which both the British Heart Foundation and Atrial Fibrillation Association sites seems to agree with) yet the cardiologist says this is not the case so bringing surgery forward to repair or replace the valve is not an option.

I have kept a heart rate diary, stopped anything that could cause AF like caffeine etc, altered my life style to reduce stress but the irony is that the anxiety and confusion I feel isn't going to help.

Any insights, opinions or comments even if it to say don't worry you're overreacting would be really welcome! Thank you

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Divegirl
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9 Replies
BobD profile image
BobDVolunteer

Hello Divegirl and welcome. I must start by saying I am not medically trained but just been in this game many years. AF usually begets AF so you might expect to have more events leading to eventual persistent but one thing you soon learn is that we are all different so nothing is simple. The valve situation does complicate matters as you have worked out. Good to try and avoid too many triggers but again some people find this successful and others not so. Regarding warfarin you will I hope by now know that AF increases your risk of having a stroke by a factor of five so perhaps a look at CHADSVASC scoring system on the main Af-A website might put you at ease here. Another [place of interest would be CAREAF website which lays down guidelines for treatment which you could discuss with your doctor.

My final comment is not meant to be derogatory but general cardiologists are not always the experts about AF. These are Electrophysiologists who are the electricians to the general cardiologists plumbers. You might discuss a referral to an EP if you want a second opinion,,, which I would.

AF generates stress and worry so you are quite normal.

Bob

Divegirl profile image
Divegirl in reply to BobD

Thank you Bob that's really helpful and gives me something to discuss with the cardiologist in January :)

Mrspat profile image
Mrspat

Hi

Has anyone told you whether you have valvular or non-valvular AF, I.e. Was the AF caused by the valve problem or independent of it? I had a congenital aortic valve problem but did not have my first bout of AF until my early 50s. I always assumed the AF started because my valve was deteriorating but my then cardiologist did not put me forward for surgery at that time and I had no repeat episodes for about 7 years.

The term valvular, as related to AF, seems to refer to the mitral valve rather than the aortic valve, so we are slightly different. It could be that your cardiologist thinks that your valve problem did not cause the AF but it happened for another reason. Most people on this Forum say that AF always progresses and yours may, regardless of whether or not you have surgery.

I am not sure why you have an appointment with a surgeon if your surgery is not imminent?

Divegirl profile image
Divegirl in reply to Mrspat

Hi Mrspat, thank you for that and no the valvular aspect has not been mentioned so that's really helpful. The surgeon is also the cardiologist so sorry for confusion. This forum has been really useful and helped ease some worries and answer some questions. So a big thank you again Mrspat.

Best wishes

Mrspat profile image
Mrspat in reply to Divegirl

Hi again Divegirl

A cardiologist is not a surgeon. S/he is a physician who specialises in cardiac care. This can be either for long term monitoring or in an emergency situation. If you need an operation, you will be referred by the cardiologist to a cardio-thoracic surgeon. Some cardiologists carry out invasive procedures such as angiograms but are not surgeons.

Pat

Divegirl profile image
Divegirl in reply to Mrspat

Thank you Pat, it's all so confusing ! The last time I saw this cardiologist he talked to me for half an hour about aviation medicine for pilots and surgery that he had performed on RAF test pilots so am really quite bemused by it all :) thank you again for your helpful clarification .

DG

BobD profile image
BobDVolunteer in reply to Mrspat

Just to expand a little, angiograms are what are known as minimally invasive procedures and like ablations are not surgery at all. They do not take place in an operation theatre (OR for US readers) but a catheter laboratory. The chaps and chapesses who perform ablations are not surgeons either but known a Electrophysiologists. They are cardiologists with a special interest in the electrical side of the heart. We say they are the electricians to the general cardiologists plumbers and you wouldn't ask a plumber to re-wire your house.

I could take a guess at the name of the EP you are seeing actually as he may be the same chap who has spoken at conference about RAF fighter pilots. The way that they fight G forces in tight turns and dives in modern fast jets (their bodies are subjected to 9 times the normal force of gravity) loads up,their hearts to the extent that they often develop AF just like athletes who train too hard. Interesting subject.

Bob

Pdotg profile image
Pdotg

All I can say, Divegirl, is that it will get less stressful as you understand more. The diary is a good idea, and I have found it very useful to take someone with me to consultations, just to listen and then compare notes with afterwards. (Sometimes we hear completely different things!) Good luck, and remember that you're not alone.

Divegirl profile image
Divegirl in reply to Pdotg

Thanks pdotg, reassurance that I'm not alone is really welcome :)

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